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Fatigue following breast cancer is a well-known problem, with both high and persistent prevalence. Previous studies suffer from lack of repeated measurements, late recruitment and short periods of follow-up. T...
Patients with cystic fibrosis (CF) experience significant disease burden, including progressive pulmonary decline and reduced survival. This multicenter qualitative study was conducted to develop a new patient...
Goal Attainment Scaling (GAS) is an individualized outcome measure that allows the setting of personalized treatment goals. We compared the responsiveness of GAS when individuals set only one goal instead of t...
This article is part of a Supplement: Volume 4 Supplement 1
The Singapore Caregiver Quality of Life Scale (SCQOLS) was recently developed and validated in two languages - English and Chinese. The total and domain scores are scaled to range from 0 to 100. However, the s...
Endometriosis-related fatigue is common and negatively impacts multiple areas of many women’s lives, particularly in day-to-day activities, social activities, physical activities, mood and emotions, relationsh...
Alertness is an important part of attention which is different from the opposite of sleepiness. This study aimed to translate and assess the measurement properties of the Toronto Hospital Alertness Test (THAT)...
Human T-cell lymphotropic virus type 1 (HTLV-1) spreads silently in the world’s population and causes several syndromes. Among these, HTLV-1 associated myelopathy, also called tropical spastic paraparesis (HAM...
Neurotrophic keratopathy/keratitis (NK) is a rare disease of the cornea that can lead to anatomical loss of the eye. Little is known about the NK experience from the patients’ perspective. The objectives of th...
According to studies of phenylketonuria (PKU), the Brazilian population’s metabolic control shows unsatisfactory indexes from childhood. Research on patients’ perceived difficulties or barriers to adherence to...
Colorectal cancer (CRC) is prevalent in the developed world. Favourable survival rates highlight the need to better understand CRC survivors’ experiences of long-term impacts of treatment, which can in turn in...
A cancer diagnosis is potentially life-threatening, likely causing distress and uncertainty, which may be psychologically debilitating. Depression and anxiety are commonly underdiagnosed and undertreated in ca...
Burns are a global health problem affecting the survivors and disrupting many aspects of their lives. It is the second most common injury in rural Nepal accounting 5% of disabilities. Burn Specific Health Scal...
Successful community-engaged research depends on the quality of the collaborative partnerships between community -members and academic researchers and may take several forms depending on the purpose which dict...
The Health Utilities Index Mark 3 (HUI3) is a generic multi-attribute, preference-based system for assessing health-related quality of life. It is widely used overseas as an outcome measure and for estimating ...
The FACT-8D is a new cancer-specific, preference-based measure (PBM) of health, derived from the Functional Assessment of Cancer Therapy – General (FACT-G) questionnaire. The FACT-8D’s measurement properties h...
ASCQ-Me®, Neuro-QoL™, NIH Toolbox®, and PROMIS®, which are health-related quality of life measures collectively known as HealthMeasures, have experienced rapid uptake in the scientific community with over 1700...
Individuals with vitiligo have an increased risk of depression, anxiety, social isolation and detrimental effects on body image/self-esteem. However, assessments of quality of life (QoL) impact have not focuse...
Partners of young breast cancer survivors (BCS) are at increased risk for deficits in quality of life (QoL). To intervene effectively, it is important to understand how the breast cancer experience impacts par...
Insomnia is a frequent sleeping disorder in the general and clinical population. With an increasing proportion of health care services being provided as outpatient care, a short, valid and reliable tool is nee...
It is unclear whether data from patient-reported outcome measures (PROMs) are captured and used by clinicians despite policy initiatives. We examined the extent to which fall risk and urinary incontinence (UI)...
Accurate score interpretation is required for the appropriate use of patient-reported outcome measures in clinical practice.
The validation of the Treatment-induced Neuropathy Assessment Scale (TNAS v2.0), a patient-reported outcome measure of symptoms associated with cancer treatment-induced peripheral neuropathy (TIPN), was previo...
Although the incidence, severity and mortality of Clostridioides (Clostridium) difficile infection (CDI) have been increasing, patients’ quality of life changes resulting from CDI have not been studied thoroughly...
Endometriosis is a common, chronic, impactful condition in women of reproductive age. In the absence of established sensitive and specific biomarkers, disease severity is determined by patient-reported symptom...
The purpose of the study was to pilot test the English and Urdu version of the Colon Cancer Screening Behaviours Survey among South Asians in Canada. The first objective was to evaluate feasibility of administ...
PROMIS Pediatric patient-reported outcome measures were developed with children from the general population, and their content validity has not been established in children with chronic disease. This study was...
The value of using real-time patient-reported outcome (PRO) measures in cancer communication has gained attention both in the clinic and in research. Despite this, no internationally accepted guidelines or tra...
The McMaster Health Utilities Index Mark 3 (HUI3) is a generic multi-attribute, preference-based system for assessing health-related quality of life (HRQOL). This study describes the translation procedures and...
Response-shift effects impact the interpretation of change in quality-of-life (QOL) measures developed with classical test theory (CTT) methods. This study evaluated the impact of response shift on measures de...
Over the past decade, the importance of person-centered care has led to increased interest in patient-reported outcome measures (PROMs). In cardiovascular care, selecting an appropriate PROM for clinical use o...
Technical innovation to assess patient-reported outcomes (PROs) facilitates their implementation in clinical practice. In particular, mobile applications (apps) allow PROs to be assessed outside of the clinica...
Patient Reported Experience Measures are promoted to be used as an integrated measurement approach in which outcomes are used to improve individual care (micro level), organisational quality (meso level) and e...
Patient-reported outcome measures (PROMs) are widely used in the United Kingdom (UK) and internationally to report and monitor patients’ subjective assessments of their symptoms and functional status and also ...
This article addresses patient-reported outcome (PRO)-based follow-up used as a substitute for regularly scheduled follow-ups. In PRO-based follow-up, patients’ PRO data filled in by the patients at home are u...
Hypertension is the most prevalent risk factor for cardiovascular disease globally. Roughly one-third of the adult population has hypertension. However, most people diagnosed with hypertension do not benefit f...
To develop and assess the psychometric properties of the Thai version of the Graves’ Ophthalmopathy Quality of Life (GO-QOL) questionnaire.
Patient reported outcomes (PROs) provide information on a patient’s health status coming directly from the patient. Measuring PROs with patient reported outcome measures (PROMs) has gained wide interest in cli...
The patient-doctor relationship is crucial to provide person-centred care, allowing the alleviation of symptom burden caused by disease or treatment. Implementing Patient Reported Outcome Measures (PROMs) is s...
Early-stage breast cancer is often treated with breast-conserving therapy (BCT), including lumpectomy with radiation therapy. Patients’ expectations of BCT remain largely unknown. Expectations affect perceptio...
Bone metastasis (BM) is the most common site of disease in metastatic breast cancer (MBC) patients. BM impacts health-related quality of life (HRQoL). We tested prospectively the psychometric properties of the...
The literature on the specification and measurement of the outcomes of the healthcare transition from pediatric to adult centered-care is scarce and methodologically weak. To address these gaps, we conducted a...
Ankle fractures are painful and debilitating injuries that pose a significant burden to society and healthcare systems. Patient reported outcome measures (PROMs) are commonly used outcome measures in clinical ...
The Patient-Reported Outcomes Measurement Information System® (PROMIS) includes a Physical Function (PF) item bank and an Upper Extremity (UE) item bank, which is composed of a subset of items from the PF bank...
This article is part of a Supplement: Volume 3 Supplement 1
There is a lack of patient derived, child specific outcome measures to capture what health outcomes are important to children with Chronic Fatigue Syndrome/ Myalgic Encephalopathy (CFS/ME). We developed a new ...
Ulcerative colitis (UC) often first presents during adolescence and early adulthood. Primary symptoms of UC are well known, yet similarities and differences of disease experience in adults and adolescents are ...
Chronic obstructive pulmonary disease (COPD) is a progressive chronic disease characterized by airflow obstruction that leads to shortness of breath and substantial negative impacts on health-related quality o...
Carcinoid syndrome is associated with a reduced quality of life that can be attributed to symptoms such as diarrhea and fatigue as well as social and financial issues. This study was conducted to psychometrica...
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